Magnolia Wang, a Biology Major and University Scholar at the University of Pennsylvania, has conducted in-depth research on the STAC3 gene and its associated genetic disorder, Native American Myopathy (NAM), and seeks to raise awareness of the rare disease and advocate for comprehensive genetic testing and research. NAM is a putative autosomal recessive disorder of the STAC3 gene that affects musculoskeletal growth and development with high prevalence in the Lumbee Tribe, a Native American community in North Carolina facing poverty, insufficient healthcare coverage, and poor access to genetic counseling and screening.
Magnolia has founded and published STAC3.org, providing insight on the natural history, epidemiology, inheritance, research, and clinical presentation of STAC3 disorder. She has also engaged with patients and caregivers of the NAM community by serving as a proponent for genetic counseling and inclusion of the genetic marker on diagnostic screening panels, with the guidance of Dr. Cynthia Powell, Professor of Pediatric Genetics at the University of North Carolina School of Medicine.
Magnolia seeks to raise awareness of patients with NAM and advocate for health equity and research into treatment development. As the Editor-in-Chief of PennScience Journal of Undergraduate Research, a peer-reviewed journal published by the Science and Technology Wing at the University of Pennsylvania and advised by a board of faculty members, Magnolia has organized a University-wide symposium featuring national leaders in rare disease research and policy.
Magnolia hopes to spread the word and cordially invites you to a talk featuring Dr. Cynthia Powell (UNC) and Dr. Susan Furth (CHOP) and their expertise on Native American Myopathy (NAM) and Chronic Kidney Disease. The event will commemorate NORD’s Rare Disease Day and raise awareness of children with debilitating genetic diseases. The talks are from 12-1 PM EST on Monday, February 28th.
Zoom link: https://upenn.zoom.us/j/92617317590